Saturday, 25 February 2012

The recent Embers study on persistence of Borrelia Burgdorferi in Rhesus Macaques following antibiotics treatment here is opening up much needed debate.

Recently Lyme Policy Wonk has been running a series of posts about this research available here

The comments are well worth reading to the latest post on the above link.

So many questions need answering and Philip Baker doesn't seem to be convincing many in his answers.

Hopefully this Embers study proving persisters will start the process of who knew what and when?

No matter that Baker says 'Furthermore, the significance of the results reported by Embers et al. with respect to human disease are far from clear and remain to be established. Sufficient information was not provided to indicate that the antibiotic regimen used was adequate to clear the disseminated infection, specially since ceftiofur — not ceftriaxone — was used. Since ceftiofur differs significantly from ceftriaxone in structure, one can not assume that it has the same PK/PD properties or even the same MID. Furthermore, ceftiofur has not been approved for use in human studies and its efficacy for the treatment of borreliosis — in humans and/or in animals– has not been established. More important, no evidence is provided to indicate that “persistors” — even those taken up by ticks in the xenodiagnosis experiments are infective and cause disease.'There has been an amendement to the original study saying that in fact it was Ceftriaxone that was used not Ceftiofur see PLoS ONE hereHe might argue about the subtle differences of Ceftiofur and Ceftriaxone but he cannot argue over the fact that 60 days of Doxycycline followed 30 days of Ceftiofur and even with that was unable to clear persisters. Here in the UK even if you are lucky enough to be diagnosed you rarely get prescribed more than one or two weeks antibiotics.

Furthermore he questions if persisters -----are infective and cause disease. Patients are sick and some of us respond well to antibiotics given long term we didn't have time to wait for research to prove how and why.

Most importantly the study itself says 'Finally, the use of variable and pulse-dosing regimens of antibiotics may improve efficacy [43] and this warrants testing in an appropriate model.'

Allen Barbour one of the authors of this study is sufficiently convinced in the persistence of this organism that he quotes it in his applications for vaccines '[0145]“This mechanism of genetic switching appears to be different from any other antigenic variation mechanism described in bacteria or protozoa and has important implications in Lyme disease. By combining different regions of the silent vls cassettes, it is possible for many different vlsE serotypes to coexist the same patient. It may be impossible for the host to mount a protective response against any one of these clonal populations, because of the small number of each type. Even mounting a response against one serotype would not protect against rapidly evolving, new serotypes.”Application number: 12/853,019Publication number: US 2010/0317026 A1Filing date: Aug 9, 2010

Anyway less of my comments go to Lyme Policy Wonk here to get an idea of who knew what and when.

What has allowed this research to be suppressed for 12 years whilst patients have been denied treatment?

Here in the UK there are a growing number of patients being diagnosed with Lyme Disease and yet what efforts have been made by our Department of Health to raise awareness of this disease which can be avoided with simple precautions and can be treated more easily if caught in the early stages?

I was lucky my arthritis and muscle weakness responded well to antibiotics and led my GP to consider Lyme Disease as a differential diagnosis. I recovered, how many patients with Arthritis and muscle weakness get better on just oral antibiotics.

I was diagnosed with Fibromyalgia, ME/CFS, Musculo Skeletal Disease Polymyalgia Rheumatica none of the medications given for those illnesses made much difference thankfully antibiotics did.

How many more people will suffer while those responsible for our health play 'monkey business' with the science?

'Diseases of the brain, they could be cased by microbes
Of ordinary microbes causing diseases as mysterious as Autism, Alzheimer's Depression.... the idea may shock. Yet evidence is mounting, revealing that the "diseases of the soul" could hide from vulgar infections. What a great hope for therapeutic revolution. For microbes, the man knows how to fight!'

I read a translation of part of this article in which Robert Bransfield MD Past President of ILADS is interviewed and also Lyme disease is discussed.

Now things are moving on a television interview February 17th 2012 20 mins into the program - AUTISM cured by antibiotics, finally in the news. Prof Montagnier (Nobel Prize) and Prof Perronne ( Infectious Diseases specialist) are interviewed.

I have edited my original post now posting a better translation.

Watch the story you will see Montagnier and Perronne The newspaper France 3, 19/20 Friday 17 February 2012.

Evening news, France 3 TV channel, 19/20 Friday Feb 17th 2012.

Autism and antibiotics
Health, with this very promising lead : will we be able to cure autism thanks to antibiotics ?

It seems unbelievable and yet in many cases, it works and symptoms do disappear.

This is the hypothesis put forward by some American scientists and some French doctors are also leading the way in the fight against autism.

200 young adults with autism have already benefited from these treatments, here is the report of this 19/20 (News program) from Claudine Gilbert and Antoine Pasquier.

(Two children, aged about 10, are playing quietly inside the house they are also chatting together very “normally”)

Commentary: Nothing unusual to be noticed about this young boy anymore, he is chatty and he is at ease in front of the camera, yet he is autistic. His mother was given an official diagnosis in 2008 after many years of anxious ponderings. Alexandre had suddenly stopped communicating when he was 18 months old.

Laurence Raguenet (Alexandre’s mother) : « he withdrew into himself, he no longer paid attention to what he was asked, he seemed lost in his thoughts, lost in his own world, we could see he did not pay attention, he did not appear present at all…

Commentary : Around that time, he also had dark rings under his eyes, he suffered from headaches, eczema and itching which made him feel exhausted. Today his health issues are practically all gone. As well as getting all his energy back, the young boy has also regained a taste for learning.

He owes this complete metamorphosis to a doctor who discovered the culprit for his problems: Lyme Disease due to bacteria transmitted by ticks. Treating this chronic infection had unexpectedly positive effects.

Dr Philippe Raymond (a member of a group of doctors and scientists called CHRONIMED) : « Alexandre received regular courses of antibiotics. The courses were given regularly during the first 6 month period but the frequency of the courses decreased after that and from the second year on he was only retreated whenever he suffered a relapse (yes, sometimes there are relapses).

Commentary: A dozen doctors in France prescribed anti-infectives for autistic children, the results are astounding, among 200 cases treated in 6 years, 4 of 5 children have seen their symptoms disappear or regress heavily

"
Dr Philippe Raymond : « When it works, the results on behavioral and even cognitive symptoms are obvious after only 3 months. In the first month, I am finding that these children already have a more serene outlook on life, they smile, their faces are more relaxed, they don’t misbehave as much, they are not as ill »

Alexandre made amazingly speedy progress at school and also with the speech therapist

Sylvie Manternach-Bancel (speech therapist) : «I can tell the difference between when he has taken a course of antibiotics and when he has not had them for a while. Recently, in the last 2 weeks, Alexandre became disturbed again, he was a bit aggressive, he was a bit more touchy. When I spoke to his mum, she confirmed that he had not had any treatment for 3 or 4 months, and that she felt the effects were starting to wear off, so it might be time for him to be treated again, to have another course of antibiotics.

In the Paris suburb of Jouy-en-Josas, Professor Luc Montagnier is investigating the infectious hypothesis. The researcher has devised a novel method which enables him to detect latent infections in the blood of young people with autism.

Pr Luc Montagnier, Nobel Prize for Medicine : « we think that they are bacteria that come from the intestinal mucosa which, when inflammation is present, will seep through the very fragile mucosa into the bloodstream and will produce toxins which can then reach the brain. That’s the mechanism we are looking at, but we don’t want to speak of one bacteria in particular. What we know though is that the signals we are detecting usually come from bacteria that are pathogenic to humans

» Commentary: This is not a first in medical history, certain illnesses that were long considered to be psychiatric illnesses, turned out in fact to be infectious, as in the case of syphilis.

Prof Christian Perronne, (Head of the Infectious Diseases Department, University Hospital of Garches, Paris-Ouest, member of the High Committee for Public Health) : « another much more recent example is that of stomach ulcers which were considered to be linked to stress, they were thought to be of psychosomatic origin, we now know that they are due to the Helicobacter pylori bacterium which is treated with 10 days of antibiotics. In the history of medicine we see that many illnesses can be due to microbes, in fact, it depends mainly on the evolution of diagnostic techniques for these microbes. »
American scientific publications are already establishing a link between autism and chronic infections.

In France, a large University Hospital is about to launch a study on the efficiency of antibiotics against autism. Alexandre’s mum is already convinced, at the age of 10 her son has definitely got back his appetite for living..

___________________________________________________

Looking forward to our UK National papers picking up on this emerging news from France.

Abstract

The early immune response (IR) in European Lyme borreliosis patients has not yet been studied in detail. The aim of the study was to analyse retrospectively the antibody development in 61 erythema migrans (EMs) patients depending on the duration of infection from tick bite by using a whole-cell lysate B. gariniiimmunoblot. The evolution of antibodies proved to be undulatory in untreated patients with two peaks for IgM at weeks 5 and 9 and for IgG at weeks 4 and 8. The analysis of IR courses after therapy identified patients constantly seropositive or seronegative and patients with repeated seroconversions with a switch, disappearance, or reappearance of anti-23 kD or anti-39 kD antibodies during the one-year period. We suggest that the antibody production in EM patients may be missed due to an undulatory IR. This phenomenon might be an as yet insufficiently researched aspect in Lyme borreliosis.

Although the undulatory character of the IR before therapy in our patients could not be determined in every single patient, the findings after treatment might reflect a similar situation also in untreated patients before therapy. So, we suggest that a single serological finding is a snap shot and gives evidence of an infection. On the other hand, the true infection might be missed by negative IR, as might be the case in the ~40% seronegative EM patients.

Serological findings do not distinguish between active and previous disease. Borrelia DNA can persist in urine for even 1 year after treatment [11], and antibodies to Bb may persist for up to 20 years after appropriate therapy [12]. Bearing in mind the characteristics of cyclic patterns in other bacterial infections, the undulatory IR noted in our study may be an as yet insufficiently researched aspect in Lyme borreliosis.

Thursday, 2 February 2012

The Countess of Mar who has for some time represented and supported the ME/CFS patients has recently taken an interest in helping patients with Lyme Disease.

Questions in the House of Lords.
Q. To ask Her Majesty's Government whether the Lyme Unit at the Health Protection Agency has always been fully compliant with all aspects of the Data Protection Act 1998, particularly with respect to retention of patient information, using patient information for purposes for which it was not originally intended and passing patient information to third parties without consent from the patient.[HL13893]

A. The Parliamentary Under-Secretary of State, Department of Health (Earl Howe): I am informed that the Health Protection Agency and its Lyme Borreliosis Reference Laboratory complies with all aspects of the Data Protection Act 1998.

Asked by The Countess of Mar

To ask Her Majesty's Government whether, in view of the statement on the Medicines and Healthcare products Regulatory Agency website that their decisions

7 Dec 2011 : Column WA173

will be "based on robust science" and "fact-based judgments to ensure that the benefits to patients and the public justify the risks" of new scientific research, they have conducted a recent risk assessment of the ELISA test for Lyme disease.[HL13895]

A.Earl Howe: We are advised by the Medicines and Healthcare products Regulatory Agency (MHRA) that manufacturers of in vitro diagnostic devices such as the enzyme-linked immunosorbent assay test should ensure they conform to the safety, quality and performance requirements of the European Commission In Vitro Diagnostic Devices Directive before they CE mark their products and place them on the European Union and United Kingdom market. This involves setting out their performance characteristics for the test and being able to demonstrate that it performs to the accuracy level claimed for it. The MHRA has a mainly post-market surveillance and enforcement role under the directive and would investigate any problems with the use of such a test that comes to its attention. Depending upon the results of any such investigation, the MHRA has a range of legal powers open to it that include removing the device from the UK market.

Q. To ask Her Majesty's Government why the Lyme Unit of the Health Protection Agency does not publish full details of its in-house immunoblots including the name, origin and specificity data of the antigens used and the criteria used to determine whether a result is positive, together with all the evidence from the peer-reviewed literature validating those criteria.

The Lyme Unit of the Health Protection Agency (HPA) does not use in-house produced immunoblots in the investigation of Lyme and has not done so since 2005. The HPA's Lyme borreliosis unit currently uses commercially produced and CE-marked Trinity Biotech EU Lyme western blots as supplementary (second stage) tests in the investigation of suspected Lyme borreliosis.

House of Lords: Health: Lyme Disease (25 January 2012)

Q. The Countess of Mar: To ask Her Majesty's Government whether the Lyme Unit of the Health Protection Agency regard the 41 internal antigen on the Mikrogen immunoblot as highly specific or non-specific for the detection of Lyme disease.

The Lyme Unit of the health protection agency (HPA) does not use Mikrogen immunoblots. The HPA currently uses commercially produced and CE-marked Trinity Biotech European Union Lyme western blots as supplementary (second stage) tests in the investigation of suspected Lyme borreliosis..

House of Lords: Health: Lyme Disease (25 January 2012)

Q. The Countess of Mar: To ask Her Majesty's Government whether Lyme disease is still being studied at Porton Down for its potential as a biological weapon.

Dstl (or its predecessor organisations) has not looked at the potential for Lyme disease to be used as a biological weapon and has never had a programme of research to evaluate either the causative bacteria or its potential as a weapon.

Lord Astor of Hever (Con) My Lords, I want to speak briefly on the specific health issue of Lyme disease, which is a rapidly ...

Disclaimer

Nothing I say can be taken as medical advice you must do your own research and discuss with your doctors.

Lyme Life written in 2009

I started suffering with arthritis in mainly my large joints especially my knees 6 years ago. The symptoms varied and I remember saying that every joint was affected except my elbows to one doctor. I was told it would be hormonal and to take the usual supplements cod liver oil or glucosamine ( I would certainly recommend buying shares in the companies producing these supplements) They had no noticeable affect.

All my symptoms deteriorated significantly over a few weeks,4 years ago. Hips shoulders and knees being the worst and I started with muscle weakness in upper arms and upper legs. I had difficulty standing and walking across a room. I was unable to walk upstairs and my husband was making plans to convert to a downstairs bedroom. I had seen 5 doctors and 3 Rheumatologists and put on steroids for Poly Myalgia Rheumatica diagnosis. I had been diagnosed with Fibromyalgia and ME/CFS.

I have X rays and scans showing signs of osteoarthritis and Rheumatoid arthritis. ( later note.- the X rays done some years into treatment showed my hands completely normal no signs of inflammation or RA confirming how they felt - normal) I have been retired early from the Civil Service having lost my job not to mention my earning potential. My illness seemed to progress through my body not affecting the same joints left to right at the same time. I had bursitis in left hip, right hip, left elbow. I had synovial thickening in both wrists. At that time I could not lift and hold a magazine so lifting a kettle I could only do if a third full and with two hands. Each joint in my hands fingers feet and toes were affected. I had swallowing difficulties and many other symptoms. None of this describes the endless and awful pain whenever I moved or the tiredness but inability to get quality sleep.

Two years ago my GP gave me Amoxicilin for a sinus/throat/chest infection. All my arthritis symptoms improved. The course ended the symptoms deteriorated I started a second course the symptoms improved. The improvement was more significant than when I had started taking steroids. This led my GP to suspect Lyme Disease. I laughed because we do not travel abroad but she said they had had other cases in the surgery in the early stages of tick bite and Erythma Migrans rash. She said but you have not had a bite. I said oh yes I have I had two on my ankles with rashes, March 05 this was confirmed on her computer when I had seen a locum doctor. My worst symptoms were waking up feeling rigid and having to painfully flex every joint in my body before struggling to get up. The only other time I had experienced this was in May 2003 during a flu like illness like no other I had ever experienced. At that time I had a bite and similar rash on my right foot which lasted like the other rashes about four weeks. I had also consulted the surgery and it was dismissed as a virus. I walked our dog daily in the woods adjacent to our house where the deer roam, prime tick area. Thus started my very lengthy search about Lyme Disease leading me through Lyme Disease Action to a doctor who specialises in this illness. He confirmed my GP's suspicions. I never had a positive blood test but then they are antigen tests and there is much research that shows they are unreliable. In my case the year of steroids and many weeks antibiotics could have affected the results. So with a clinical diagnosis and following ILADS International Lyme and Associated Disease Society guidelines I continued on antibiotics for two years. Both my doctors continued to treat me despite of Health Protection Agency advising against long term antibiotics. I am now nearly 100% recovered I have no pain or muscle weakness. I can walk upstairs something I could not do for three and a half years. I can garden do house work and live a normal life. I still need to pace myself and with only a few months to 60 will not be looking to return to work. Life is such a joy. Sadly there is much controversy about Lyme Disease and doctors in UK are taught that it is so rare. Well where I live in Guildford I have been in contact with a dozen other people with it so perhaps not so rare as HPA would like us to believe. I am in touch with nearly 2000 other patients through a chat line Eurolyme most had been misdiagnosed with several other illnesses. Look at UK charity Lyme Disease Action if you want to read more about this illness. There are many MP's taking an interest in the problems surrounding diagnosis and treatment see above charity links into a recent meeting at the House of Commons.

Thank goodness there are some thinking doctors around who have courageously treated me against opposition and I have made such a miraculous recovery albeit rather a lengthy one. One day there will be many more people who are helped with their chronic illnesses when IDSA starts taking note of what our courageous LLMD’s are doing following ILADS Guidelines.